Anyone take new drug Camzyos (mavacamten) for HCM?

I was diagnosed with hcm in October 2021 at the age of 62. I started the Camzyos in June 2022. My dr and I both had to get in rolled in the rems program. ( I am NOT in the trial program) I had good results from the medication right away . Before Camzyos I was napping a lot during the day.I am now able to go without any nap some days or just one nap. I am able to participate in life now. I still do have to watch what I do and not over do things. But I am able to do things which is so nice. It has made a big difference for me. My copay for the Camzyos is $10.00 a month . They really want to make sure everyone who needs this medicine can be on it . They also do cover the fee for my echocardiograms. I am so thankful for Camzyos it has given me back some of my energy. The doctor does not hear a murmur anymore and the the people that do my echocardiograms are amazed at the difference they see also.

Terry - I greatly appreciate your response. Nothing is better than a candid review from someone in the same situation. This is such a new drug, and I can get a little obsessed with "due diligence". I am nearly certain that I will try Camzyos and I will give feedback on this forum for others. Thanks for your "testimonial"!

I am a Canadian (71 yrs old) with HCM living in British Columbia and have recently had my Cardiologist put me forward for Camzyos. He has connected me with the local distributor for this new medication. I am just sorting through my own research and confess to some anxiety. The medication is very new and not with potential side effects. I am leaning towards trialing this and will certainly post when I do.

Jess: I am a 73 year old male with a long standing diagnosis of Obstructive HCM. Over time my HCM progressed and I experienced the expected symptoms and clinical data of progressive heart failure. I am otherwise in generally good health, but my heart condition required significant and frustrating adjustments to my activities of daily living.
GOOD NEWS! I began Camzyos in May 2022. After three daily 5mg doses all symptoms were gone. I thought it was psychosomatic! Now after 7 months all is still excellent and after a couple of months the dosage was reduced to 2.5mg daily. I have been under a very strict protocol of monitoring and testing (MD visits, echos, and EKG).
Camzyos does not work for everyone and might he dangerous for some. But it is worth a try under expert supervision and careful follow up.
Camzyos has been a life changer for me! I can only thank God, my cardiology specialist in HCM, and his team in Memphis, Tn. And, the increadible brains that invented this new drug!
Peace!

I have just joined this forum. I am Canadian with HCM and Camzyos is being recommended for me by my Cardiologist here. I have just been contacted with the pharmacy in my city (Victoria) that now handles this medication. Needless to say I am quite unsure about Camzyos, noting that heart failure is one of the potential side effects! I am researching information online to educate and reassure myself, found this excellent forum and thought it a good place to pose this question to others. I am 71 yrs old and was diagnosed about 5 years ago after a number of afib incidences. Currently on blood thinners, beta blockers and a Rythmodan (disopyramide), which I gather will be unnecessary if the Camzyos works for me. I will be having the necessary ECGs to monitor. Thanks for reading this long message!

Yes, I’m taking it. My co-pay is $35/30 days. In my third month with this Med. At this point, I haven’t seen any changes yet.

Thank you so much! They provided me all the information I needed.

@hazmat1, I suggest contacting Patient Account Services in Billing & Insurance: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us

I am trying to find out the codes for my Mayo scheduled tests this July in Rochester and their costs to have an estimate. Tried to leave phone messages and sent several Emails. Maybe I am using wrong contacts. Would you be able to send me in the right direction? Thank you so much!

Yes, I will post the final verdict 🙂